anyone else got Ankylosing spondylitis?

chrissiewissie

Hey everyone
I was diagnosed with ankylosing spondylitis a few months ago and have been taking ibuprofen at the highest dose on slow release. Combining that with physio and I've been feeling loads better than I did, even going shopping!
I've noticed recently that my left shoulder blade seems to be clicking and sort of locking if I'm sat at my desk at work for a while. It happens several times a day. It is quite painful when it clicks back into place and I'm worried that the disease is already progressing. I don't have another appointment with the rheumatologist til september so I could talk to the physio about it.
Just wondering if anyone else has experienced something like this.
Thanks guys
C xx

As5567

chrissiewissie wrote:

Hey everyone
I was diagnosed with ankylosing spondylitis a few months ago and have been taking ibuprofen at the highest dose on slow release. Combining that with physio and I've been feeling loads better than I did, even going shopping!
I've noticed recently that my left shoulder blade seems to be clicking and sort of locking if I'm sat at my desk at work for a while. It happens several times a day. It is quite painful when it clicks back into place and I'm worried that the disease is already progressing. I don't have another appointment with the rheumatologist til september so I could talk to the physio about it.
Just wondering if anyone else has experienced something like this.
Thanks guys
C xx

Hi chrissiewissie, I also have AS. I also get joints that click and lock into place and know how you feel, I was told that the pain and sometimes the clicking is inflammation of the tendons which is a symptom of AS. I'm glad that your current medication is currently working for you, I would mention the pain and clicking at your next appointment as that could be a sign that your current medication is not doing enough to keep the inflammation levels down which is what causes the most damage with AS. You say that you think the disease is progressing, it's hard to tell as everyone is different.

For me AS has been very random, I was diagnosed with Juvenile AS when I was around 16 but had symptoms since I was about 6-7 years of age. For me the disease has been kind and evil, I have had months of my life where I have felt "normal" in myself. Aka not much pain, some stiffness etc and other times where I have felt like I'm going to be stuck in bed for the rest of my life.

I suspect you will be given some stronger medications some time in the future to help slow down progression and to control the symptoms should your condition get worse. It's a scary thought of the condition becoming worse but there are many drugs available for use now and things are much better for people with AS and other auto immune arthritis than they were 10 or so years ago.

Hopefully this was some help to you

ouchpotato

I am yet to be diagnosed by a rheumatologist, but my GP suspects I have AS given my history etc.

I had to be taken off all NSAIDs recently due to a bad reaction, and since then the inflammation seems to be wreaking havoc in my body. It was pretty much confined to my SI joints, hips and occasional knee, but now both knees, elbow, shoulder, fingers and toes have joined in. The clicking is horrible, and as this was minimal and non painful while on NSAIDs I suspect it IS the inflammation that is causing it. My knee locks, and then clicks loudly, my shoulder grates and clicks and seems to get 'stuck'...it's horrible and while waiting for it to click is very scary as it seems like it is going to break. It worries me that I am not seeing a rheumy until mid July, and in the meantime the inflammation is going unchecked.

Good luck

x

maria09

Hi
It's taken four years and my daughter to get ulcerative colitis diagnosed last July for my diagnosis to be confirmed as all my bloods are totally normal no raised CRP no raised WBC no raised anything!But all my joints creak grate and crack
When I told my rheumy about my daughter he said I knew an auto immune disease was somewhere in the family!
I've been lucky as he never ever gives up wanting to get to the bottom of a problem even when nothing shows up
Can you contact appointments and ask if they can get you in any sooner or if ant cancellations crop up could they let you know
Do you know if there is a rheumatology nurse specialist at the hospital as they are really good for help and advice
Keep strong
Maria

woodbon

Hi
I am sorry to hear of your diagnosis but at least now you know what your fighting!

I am going to have an MRI to see if I have AS as I carry the gene, shown up in a blood test and also my Mum had it. They do say that only a small number of people with the gene go on to get it, so I'm hoping not to have it.
Love Suexx

chrissiewissie

Thank you As5567, ouchpotato, maria09 and woodbon,
I appreciate your experiences and it does sound like the stuff happening with my shoulder is part of the AS, as suspected.

I also had an allergic reaction to several NSAIDs and I'm luck I'm ok on the ibuprofen, although apparently it is from a slightly different group of meds, according to the rheumy.

I think I had sort of lulled myself into a false sense of security when these meds and the physio seemed to make such a difference and I thought they would help for a while before I needed anything stronger or more heavy duty. They have helped with the OA in my toes as well, which I'm taking as a big bonus!

Thanks again guys,
Cxx

Chocoholic

Hi all
I'm new to this, I have AS and just started medication (naproxen) but developed breathing problems. Came off it and it got better. It tried an ibuprofen and it did the same even though before it never gave me side effects. Apparently I have costochondritis too so I'm not sure if the breathless is just that or made worse by the NSAIDs. Anyone had this? X

maria09

Hi
Yes I have costeocondritis too and oh boy it really hurts at times and does affect my breathing but luckily not too bad
Have you discussed this with your doctor or rheumy if you have one?
Might be worth making an appointment
Maria

stickywicket

Hello chocoholic and welcome to the forum. I don't have costochondritis but I do have mild asthma. I'd had it as a child and fully recovered but many years later it returned when I started ibuprofen. The ibuprofen went but the asthma is still with me :roll: I think NSAIDS can do this with lungs. Are you taking a DMARD? If not, that might be a better option for you. When do you next see your rheumatologist?

[Deleted User]

With me it is as ASS5567 describes. I have months without any problem at all. And then, suddenly, it strikes with unreasonable violence. And I can't always see a pattern in that. Stress is bad. And humidity. It is usually warm and dry where I live, but sometimes it flares up in summer and even when I feel rather relaxed. Bizarre....

Chocoholic

Hi all
Thanks for the replies.
The rheumy diagnosed costo because of the pain bring in mu ribs and shoulder areas but I wasn't breathless at that point. That came the next week which is why I put it down to the naproxen unless it's a coincidence? My next appt is 23rd oct I have emailed to ask whether I should persevere with the medication but I'm a bit reluctant I must admit.
X

Sarahd1609

Do any of you get a really horrid pain suddenly? I was simply putting a dish in the I've. And couldn't move. I'm in agony. Had to be lifted in and out if bath by my husband as I though heat may help and am now on the bed in tears as the pain is unbearable. I'm not sure is it the AS flaring up again or sciatica or both as I have never ever felt this much pain. I'd rather give birth again!!!

stickywicket

I hope that, by now, either the pain has eased up a bit or you have booked to see a doc, Sarah.

I'm sorry, I can't help with any advice. Please let us know how you get on.

Sarahd1609

My rheumatology team are trying to get me to the consultant sooner than originally planned as I can barely walk with my back at the moment so hopefully they can arrange something although thanks to a change in the rules at work I will need I wait until next year for an op if necessary as they are arguing that I have been off 5 months already in the last 12 so have only 1 month to spare, before I drop to SSP. I've argued they have to see me as a disabled member of staff with a long term illness but they are arguing that as I so far do not claim disability benefits or are entitled to a blue badge that I am only disabled by my own standards and not works. So another battle to fight but that's the joy of arthritis xx

stickywicket

I'm afraid I've no knowledge of working practices or how they define 'disabled'. If you put a thread up about it on 'Working Matters....' forum someone might be able to throw some light on it. This might help https://www.gov.uk/definition-of-disability-under-equality-act-2010

Sarahd1609

Thanks Stickywicket. You always have fab advice xx

Bovey1

I've had AS for a very long time. There is a website dedicated to sufferers called NASS. National ankylosing spondylitis society. There is a wealth of information, support, and an app that will help you fight this disease. Knowledge is everything when you have AS. Today's medicines are far superior plus Drs are far more knowledgeable. Follow advise, do the exercises the physio and NASS say to do. They will help the pain and reduce the progress of the disease. Exercise is vital. It took 42 yrs to diagnose me and my spine is fused, had I been diagnosed earlier it might not have been so bad.

Sarahd1609

Thank you Bovey. Will look into NASS as I will do anything to help with the pain! Xx